As recently as a decade ago, Americans facing life-threatening and life-limiting conditions had few places to turn for help in managing the symptoms and stress of their illnesses. Today, such services are increasingly offered through hospice and palliative care programs that work with patients and family members to help optimize quality of life. Such care—which ranges from pain management to psychological and spiritual counseling—is provided to patients at home or in nursing homes or long-term care facilities, freestanding hospice facilities, and hospitals. (Hospices generally focus on patients with fewer than six months to live, while palliative care programs aim to alleviate the symptoms of serious illness regardless of prognosis and with or without curative treatment.)
Although the field is still young, it is growing quickly. The American Board of Medical Specialties recognized hospice and palliative care as an official subspecialty in 2006, and the number of such programs has been steadily increasing nationwide. In 2007, 39 percent of all patients who died in the United States were under the care of hospice, up from 35 percent the previous year, according to the National Hospice and Palliative Care Organization (NHPCO). An analysis by the Center to Advance Palliative Care (CAPC), based on data from the 2008 American Hospital Association Annual Survey of Hospitals, found that 1299 hospitals (or 31 percent) have palliative care programs. In 2000, there were only 632 such programs, less than half as many.
Significant progress also has been made in establishing quality metrics for programs providing these services. The National Consensus Project for Quality Palliative Care, a coalition of the American Academy of Hospice and Palliative Medicine, CAPC, Hospice and Palliative Nurses Association, and NHPCO, which published Clinical Practice Guidelines for Quality Palliative Care in 2004, initiated this process. These standards aim both to explain the history and philosophical basis for palliative care and to standardize palliative care practices for the growing number of people with life-threatening or chronic debilitating illnesses, conditions, or injuries. The National Quality Forum also identified hospice and palliative care as a national priority area for health care quality improvement, publishing a report endorsing a national framework and 38 preferred practices for such services in 2006. This report includes a set of expectations and associated best practices to further promote the development of palliative care standards for reimbursement, internal and external quality measurement, regulation, and accreditation.
Despite such progress, there are significant access and payment barriers to hospice and palliative care. This is a particular challenge for children, an issue explored in the In Focus. Financing also is a concern for palliative care teams working in hospital environments, including those at Mount Sinai Medical Center, as described in the Case Study. Medicare and other commercial health plans only reimburse for physicians' time spent on palliative care. They don't pay for the services of nurse practitioners, social workers, chaplains, and, in some cases, massage therapists who work with physicians to provide care that meets the needs of a very sick and complex patient population. Medicaid provides little reimbursement, leaving many palliative care programs reliant on hospital dollars and philanthropy to subsidize their programs.
In spite of these challenges, leaders in the field are optimistic that with quality at the center of their programs, the subspecialty will gain further legitimacy within medicine. As such, they are urging the Joint Commission to go forward with a palliative care certification program—originally planned for the fall of 2008 but put on hold due to the current economic environment. At the same time, the CAPC has launched a National Palliative Care Registry, which will initially focus on program statistics. The registry will enable hospitals to compare their palliative care services to those offered at similar institutions and eventually to benchmark their results.
